Tag Archives: advocating

Good News on access to drugs for rare conditions: Thank you, Minister!

Health Minister Michelle O’Neill today announced that eligible patients in the north of Ireland will receive innovative new drugs for the treatment of very rare conditions. The Minister has confirmed that drugs evaluated under the Highly Specialised Technology Programme of … Continue reading

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Rare Disease Day 2016 Patient Voice and Empowerment

Rare Disease Day 29 February is getting close!  Here are the full programmes for the Conference in Riddel Hall, and for the Reception in the Long Gallery at Stormont; follow the links in the post below to register NOW The … Continue reading

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What’s On: Coming Events..

Just to keep you all informed- here are two of the rare disease related events which are coming up this month! The second All Ireland Neuromuscular Research and Information Sharing Day is being held in Riddell Hall, Belfast, on 16th May … Continue reading

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Implementation Plan Consultation: Open Meetings

The Open Meetings on the Draft Rare Disease Implementation Plan are ongoing: 6 January 2015: Lecture Theatre, Level 2, South West Acute Hospital, 124 Irvinestown Road, Enniskillen Co Fermanagh, BT74 6DN, 3.30pm to 5.30 pm 7 January 2015: Mourne Country Hotel, 52 … Continue reading

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Rare Disease Day

The 2013 theme for Rare Disease Day is Rare Disorders Without Borders– particularly relevant to a small island on the far west of Europe with its own international border. NI Rare Disease Partnership are co hosting a joint event with … Continue reading

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